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Elizabeth's Story

Elizabeth, an albinism activist, Uganda

Elizabeth's Story.

Disability Activist, Uganda.

"Growing up with albinism was not an easy thing.

My parents were not comfortable being seen in public with me. If there was a party they’d go without me. If I needed medication from the hospital they’d get someone else to escort me. If I had a problem at school and I’d say ‘I need you mommy’ my mum would send her cousin because she was ashamed to have had a child with albinism. It was not easy growing up. I never enjoyed my parents love.

I had a teacher who would say, ‘Where is the thing with the squinty eyes? Tell her go out.’ If I insisted on staying in the class she would beat me with canes. It was dreadful for me. I hated going to school.

No one wanted to play with me. People would run away from me saying, ‘an animal is coming, a demon is coming.’ It really disturbed me. It made me stay indoors.

There are many dangerous myths.

Many men believe if they sleep with a woman with albinism they will get healed from HIV. Or, if they get one of our teeth, or are private parts, they will become rich.

I felt so isolated. But, then I heard about a group that was forming that was going to be the first disabled people’s group dedicated to people with albinism. I knew I had to join them immediately, and now I am their Chair.

It has changed my life.

I used to hide from people but now I feel I am at home. I can stand up and air my views. I’ve been on state TV raising awareness about people with albinism. Now, people look at me as somebody in the community. I really got happiness. From nowhere I am now somewhere.

We work with the police, hospitals and schools.

We carry out sensitisation trainings about what albinism is. It has really done very good work. I talk about how albinism happens, that we are human beings who are just missing something in our bodies. We are not demons.

I talk to parents. Most mothers cover their babies with albinism in many, many clothes because they don’t want people to know. Many children with albinism don’t go to school. It’s only after this community sensitisation that children are starting to go to school. I am also a teacher and people can see me as an example. If you send your child to school she could become a teacher too.

Light from the sun affects the eyes so I wear sunglasses. I put on long sleeve clothes to protect from my skin. We teach parents how to protect their children’s bodies. Parents have to know how to take care of their children.

Thanks to ADD International's help we have gone from walking with our heads down to our heads up."

Let's build movements together.

Millions of disabled people in Africa and Asia are still condemned to a life of poverty and exclusion. Right now, organisations of disability activists like Elizabeth are working to fight discrimination and ensure every disabled person gets a fighting chance at living their best life. They urgently need your support.

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